Parkinson's And Exercise

You have Parkinson’s and your doctor recommended exercise. I don’t have to explain why. All PWP know that exercise is one of the few things you can do to help slow the progression of the disease and new research suggests that exercise may decrease neuron injury in PD as well. So what exercises should you do? My answer is easy, any and all. Which ever you most enjoy and are most likely to keep doing. Which exercises are most beneficial for PWP? The vote is in. All research points to dance for cognition and fitness, Tai Chi for balance, LSVT Big to maintain and recover movement amplitude, and high intensity interval training to slow the progression of the disease as four of the best forms of exercise that people with PD can do.

PWP may have difficulty walking. They take short shuffling steps and have problems with posture, freezing and balance particularly when turning or walking backwards resulting in an increased risk of falls leading to injury. Dance involves learning specific movement strategies and improves strength, flexibility, agility, coordination, gait, sequencing, balance, and overall fitness. Dance class installs confidence and joy and leaves me feeling that I can move better when the class finishes. Partner dancing involves the brains executive functions that benefit cognitive processes of working memory, planning, and task initiation. Partner dancing promotes socialization and adds complexity because you have to continually adjust your movement to that of your partner and other dancers around you. Dancing to music teaches you to adjust your movement to external cues. Dance is a great workout combining physical activity, social interaction, and mental stimulation. It can enhance your social life, promote self-confidence, reduce stress and depression, promote relaxation, be a wonderful outlet for self-expression and creativity, and it is fun.

My neurologist said that balance cannot be treated medically. You are on your own. Tai Chi is one of the most recommended forms of exercise for maintaining and improving balance because it involves a constant shifting of weight from one foot to the other and from one part of the body to another. It is a set of low impact gently flowing movements believed to have mental, physical, and spiritual benefits. The movement patterns are preset and performed in a slow, focused manner accompanied by deep breathing. It has been likened to meditation in motion. Tai Chi teaches you to land heel first and then roll your foot down which prevents stubbing your toe and tripping. As an extra incentive, researchers found that seniors who do tai chi several times a week have improved memory and thinking skills and are less likely to fall. You can do it by yourself once you learn the routines.

LSVT Big is a movement therapy based on the principles of the Lee Silverman Voice Therapy speech program. Its goal is to restore and maintain normal movement amplitude that has been lost to PD by recalibrating the way a person moves. Through multiple repetitions of high intensity, increasingly complex, large scale movements involving the whole body LSVT Big reteaches you to move normally as before PD. It enables PWP to move with more confidence and safety by improving mobility, gait, posture, skeletal alignment, freezing, and balance. Both large motor tasks such as walking faster, taking bigger steps, standing up, and dressing and small motor tasks like buttoning a shirt, tying shoes, and writing are often improved within a month of dedicated practice. LSVT Big emphasizes high intensity, multiple repetitions, and complexity which is key to activity dependent motor learning and neuroplasticity.

Many PWP find cycling, non contact boxing, and ping pong beneficial. Others do yoga for flexibility and relaxation and weight training for muscle tone and strength. Do whatever works best for you. Start slow. Try to exercise 60 minutes a day. Multiple 20 minute sessions are also good. Researchers specifically recommend high intensity interval training (four rounds, each round consisting of 4 minutes of high intensity forced exercise and 3 minutes rest). Be happy with whatever you can do and build on it. Think of every time that you exercise as a victory over PD. If you do nothing else walk. Walking is wonderful. Good for the whole body and also gets you out and into the world. 

The Parkinson's Brain

The brain is the most complex known structure in the universe. It weighs about 3 pounds and is mostly made up of billions of neurons and glia cells. Glia cells protect neurons by surrounding them and holding them in place, supply neurons with oxygen and nutrients, insulate neurons from each other, and destroy and remove dead neurons. Neurons transmit electrochemical signals to other brain cells, muscles, and gland cells, and control all muscle movement. 

Parkinson's disease occurs when dopamine producing neurons located mostly in the substantia nigra, an area of the brain that controls movement, become impaired or die. Normally, these neurons produce dopamine, an important brain chemical. When they die or become impaired, they produce less dopamine which causes the Parkinson’s related movement symptoms of tremors, rigidity, slowness of movement, and postural instability. Some areas of the brain have demonstrated the ability to grow new cells but not the dopamine producing cells of the brain. Scientists still do not know what causes cells that produce dopamine to die or fully understand how PD affects the brain.

PWP also lose the nerve endings that produce norepinephrine, the main chemical messenger of the sympathetic nervous system, which controls many automatic functions of the body such as heart rate and blood pressure. The loss of norepinephrine causes some of the non-movement symptoms of PD such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract, and is important in preventing sudden drops in blood pressure when a person stands up. Recent research found that norepinephrine may help slow brain decline leading to dementia. Norepinephrine is released when the brain feels engaged, leading researchers to encourage challenging the brain with complex activities that exercise the brain.

The brain is so important and so smart that it developed a way to protect itself. The blood brain barrier was discovered in the 19th century when experiments revealed that dye injected into the bloodstream colored all of the body’s organs except the brain and spinal cord. When the dye was injected into the spinal fluid, only the brain and spinal cord were affected. The blood-brain barrier is made up of special, tightly bound cells that keep the brain safe and stable by allowing oxygen and nutrients to pass through but preventing toxins, pathogens, and other harmful substances from entering the brain through the bloodstream.

Parkinson's disease dementia is a decline in memory, thinking, and reasoning that develops in many PWP. Many brain cells of people with Parkinson's contain Lewy Bodies, unusual clumps of the protein alpha synuclein. Researchers are trying to better understand alpha synuclein and the impact it has on Parkinson’s disease and Lewy Body dementia. They are looking for ways to prevent the formation of alpha synuclein in the brain as well as ways to dissolve it once formed. Dementia with Lewy Bodies is the second most common type of neurodegenerative dementia after Alzheimer's disease.

The brain continues to grow, develop, and learn throughout life so remember what the Door Mouse said, feed your head. Nourish your brain and life with mental stimulation, physical exercise, and a healthy diet.

Parkinson's Tremors

Parkinson’s turned me into James Bond’s favorite bartender. All my drinks are shaken not stirred. Sorry, sorry I know PD and tremors are no joke but I couldn’t help myself. Tremors often are one of the earliest and most noticeable signs of PD. They are caused by reduced levels of dopamine due to the loss of dopamine producing cells in the brain.  About 70% of people with PD have a tremor at the time of diagnosis. Researchers define two main types of PD tremor, resting tremors and action tremors, but PWP know that no two of us are alike so there are as many variations as there are people who have the disease. Tremors can be mild or debilitating or anywhere between. Consider yourself lucky if you don’t have them.

Resting tremors are the most common form of tremors associated with PD. They occur when a body part is at rest against gravity, when the muscles are relaxed or still, when you are lying in bed, or when your hands are resting on your lap or at your side. It is inhibited while moving and not present (thankfully) while sleeping.

Action tremors are less common than resting tremors affecting about 25% of PWP at diagnosis and 40% during the course of the disease. Action tremors occur during any type of movement of an affected body part and are triggered by muscle or muscle group contraction. Action tremors can be task specific caused by the movement they accompany. Writing, for example, often causes the hand to shake. 

Resting tremors are often referred to as pill-rolling tremors because they resemble the motion of rolling a small pill between the thumb and index finger. Tremor amplitude decreases with voluntary activity. Stress, of course, makes them worse. All PWP are different but generally tremors start in one hand, then progress  to the arm and foot on the same side of the body, then go to the other side of the body, and may then go to the whole body including the head. Tremors are not the worst PD symptom but they can be bad. They may be mild or strong. They may continually get worse or they may get worse for a period of time  then level off and improve, and sometimes they may stop. Tremors are slightly less common in younger PWP. PD usually progresses more slowly with those that have tremors than those that don’t.

Tremors are treated medically with drugs and Deep Brain Stimulation. DBS passes a small current with high frequency through areas of the brain that block motor function and has a 90% success rate in decreasing or getting rid of Parkinson’s tremors. There is some evidence that stress reduction techniques like yoga, deep breathing and meditation are helpful. Some people get relief by reading or watching TV, and others find that socialization reduces symptoms. Researchers say that activity lessens tremors which seems true except, like all things PD, when it acts contrary and makes me shake more.

Parkinson's And Happiness

Before I had PD I was not what you would call an overly happy person, someone who walks around with a smile on his face singing don’t worry be happy, but I was okay. I’ve changed. It seems hard to believe but even though Parkinson’s is my new normal I am now more or less happy. PD has been with me seven years now and although I keep wishing it would leave, it seems to have found a home in me, settled in for the long run, and doesn’t show any sign of wanting to go away. It is more noticeable and affecting me more this year. My symptoms (tremor, fatigue, balance) are worse. It is harder to accomplish simple daily tasks (bathing and dressing), and some days are pure misery. My comfort zone and world are shrinking. I don’’t want to travel and hesitate to take even short day trips. I am less comfortable being with people who don’t have PD and more comfortable with people who do. And yet, somehow I am okay. I am getting things done, interacting with people, enjoy being alive, and even laugh and smile and have a sense of well being once in a while. We know PD is brutal but could it have helped me become a happier and more positive person?

I am involved with the PD community and know a number of people that have the disease. Even though there is no cure and they are aware that their symptoms are going to get worse they are, in general, no less happy or more depressed than people who don’t have the disease. When we get together one would think that with that much suffering and misery in the room it would be a fairly gloomy gathering but it’s not. We are happy to see each other and be together. There is a lot of laughter and joy and the sense of being part of a special community.

I really don’t know what causes some people to be happy and others not. I do know that there are four primary chemicals in the brain that effect happiness: dopamine, oxytocin, serotonin, and endorphins. You would think people with PD would be miserable due to a lack of dopamine. Instead, while not exactly bubbling over with joy, a number of people with PD have told me they have become a more positive person since getting the disease. At first I thought they were hitting the levodopa a little too hard and getting high from their meds but then I realized that I had become a slightly more positive person as well. 

There is something special about people with Parkinson’s and the PD community. It is not just that we have an in common shared experience that bonds us together. Knowing that a person has PD makes them more interesting to me. I want to know everything about what the disease is doing to them and what they are doing to cope with it. An important factor in fighting PD is being part of an understanding and supportive community. 50% of PWP experience depression as a symptom but they tell me that they are usually okay when with the PD community. Those involved with the PD community seem to be doing better than those facing it alone. I could be having a bad day and when I get together with other PWP my symptoms lessen. Sharing your discomfort with others that understand it seems to lessen pain and defuse it a little. Avoid isolation. Don’t face it alone.

Writing about PD is my attempt to understand and define what is unique and special about Parkinson’s and how to cope with it. Parkinson’s changes us. Taking an active part in PD community informs and strengthens us. Why do I have a sense of well being and that I am part of a special community? Every once in a while when writing about PD or being with other PWP I’ve had glimpses and hints but haven’t found the answer yet. I will let you know when I do. Let me know if you find it first.

Divorcing Parkinson's

Dear Parkinson’s,

Listen Parkinson’s, I’ve been living with you for seven years now and I still don’t understand you. I know that PD is a neurodegenerative brain disorder that affects dopamine producing neurons that transmit signals between the brain and nerve cells but what I am trying to get a grasp on is what you are doing to me physically and emotionally. I really don’t understand. I should, as we have been living together for a long time. Sometimes I am okay being with you and then without warning and for no reason you hit me with a new symptom or a major case of the PD blues. I had a hard time getting dressed yesterday. Today i am exercising and humming a happy tune. Talk about inconsistency.

I talked to my PD friends even though I know we are snowflakes, no two alike and that each of us has a personal PD. They don’t understand either. All we want to know is what each day will be like and how you will progress over time so we can best prepare for the future and be comfortable having you around. But no, you are inconsistent and keep surprising me with new symptoms.

Putting up with you is tough. You were okay when we first met and it was only tremors in my right hand but you changed. You spread the tremors to the rest of my body, made it hard to walk, messed up my posture, and upset my balance. Then you introduced fatigue, anxiety, insomnia and the other non motor symptoms into our relationship and that was too much. And just when I am ready to give up, I have a good day and remember how it used to be when we first met and you weren’t too bad and I thought I could live with you. 

I try to prepare but don’t understand how you decide which symptoms to hit me with for the day. Will it be increased tremors, or really bad balance, or over powering fatigue, or by some miracle surprise will I be okay for the day. Then there is the intensity: small, medium, large, or the lay me out extra large full misery. So I sought professional help but instead of improving, you got progressively worse with time. I have to take drugs just to put up with you and get through the day.

I tried my hardest to live with you but you only got worse. I’ve had enough. I want a divorce. I no longer want you in my life. No more sleepless nights, no more tremors, no more falling, no more stress, no more Parkinson’s. I’m contacting my neurologist to see what my options are. You will be hearing from us.

Sincerely,

Peter